Written after returning from a long trip across the country to be with my dear family member. She started to feel suicidal and hospitalized herself.
29 May 2012
Open Letter from Kaylan Rose’s mama,
Prepare yourself for a bit of rambling.
First let me tell you how sorry I am for the loss of your dear one, if you’ve lost someone to suicide. The loss of a loved one at any time is awful, and to lose someone to suicide seems harder somehow. I lost my sweet friend to depression years ago – 10 years before my own kind & gentle daughter would also die of depression. I remember the shock and sadness when my friend died, the feeling that there was a hole in the world that could never be healed. Losing my daughter has left me with an indescribable emptiness and grief.
Since Kaylan Rose died of suicide last year, I know for sure that there is a hole in my mind, body, and soul that will never be completely healed, but I am determined to survive in order to honor the blessing of her life upon mine. It was the only time I’ve been grateful for my parents’ passings, because they didn't have to bear the pain, and because I knew already that even though it seems impossible, the death of people I love the best can be survived. I want you to know this, too. That said, know that your own life is not your own, but belongs of everyone who loves you, including people you haven’t seen for a while.
Some people very close to me have recently lost a loved one to suicide, and as a result many of last year’s emotions and thoughts have returned to me. The “whys” are what I remember the most through the weeping, and screaming, and arguing with God that it couldn’t be real. “Why” didn’t she ask for help? “Why” didn’t I know she was so ill? “Why” didn’t we insist on taking her home with us? “Why” didn’t her friends know what to do? “Whys”….????...seem to go on forever. “Why” is a question everyone asks, and nobody can answer except those who have attempted suicide and lived. We so desperately need their stories. We can't know what we don't know.
It’s weird this failure to thrive from mental illness, because I was raised in a big family of really functional people – though many of us live/d with serious mental illness. My dad was an 8 year veteran of WWII, and was highly productive and well travelled his whole life. My daddy lived with schizophrenia and PTSD from age 24 until he died at 77. Many of my family members live, or have lived, with BPD, MDD, OCD, severe social anxiety, Tourettes, GAD, Panic Disorder, and I have Bipolar (used to be called mania when I was a kid). My older siblings and I knew that mental illness was just exactly like the arthritis and diabetes that runs in our family. When someone got sick with depression, they told someone or one of us noticed, we called the family together and either took them/me to the doctor or hospital, or set up someone to be a caregiver for a while. But our illnesses don’t define us. If we didn’t tell you we had a mental illness, you probably wouldn’t know, you’d just think we were a bit more fun or intense than the average bear.
Without knowing what it was, my siblings and I had QPR, Question-Persuade-Refer, drilled into us as children, even though it wasn’t’ invented yet. Taking our dad to the hospital for catatonia was no different than giving our grandma apple juice for a diabetic crash. Unfortunately I didn’t manage to drill this into my children, because by the time they would have been capable of helping me I was already being treated and in recovery. Way more people die of mental illness than murder or AIDS or heart attacks… but QPR isn’t in the public psyche – YET.
The reason I’m writing this letter is that I want all of you to know that QPR training is more crucial than CPR... again - WAY more people die of suicide than heart attacks, AIDS, or murder. I want you to know that people with mental illness are valuable people who contribute to society, and not “crazy” people that deserve to die and won't be missed. I want you to know not because I am diagnosing anyone in particular as at risk, but because having a friend or family member die of suicide places everyone close to them at 4X the risk. It’s just the math.
Nobody knows why exactly. There are many known facts about suicidal thinking. It’s common, 1 of 5 people experience it in their lifetimes, but people think it’s rare. According to stories from suicide attempt survivors, suicidal thinking mostly feels reasonable and calm at the time, but most other people believe that it’s tortured and frantic. And suicidal thinking can be easily turned around by straight up asking “are you thinking of taking your life?”, but people believe that straight up asking makes it worse. It doesn’t. Ask.
After Kaylan died there was such a deafening outcry of shock and disbelief from inside and outside of me. I felt like she had super-nova’d her brilliance and beauty as well as her pain and confusion into me. It felt like shards of her delightful and conflicted self shot through my skin and into my heart. I felt the crushing weariness and nausea of extreme physical depression. At first I couldn’t bear the pain of other people’s pain, but then the talk of a benefit concert started. Then when the other “kids” in her realm needed me for advice and comfort, I started to read on the subject in a bit of a frantic panic.
Kaylan read obituaries. I don’t know why. So do lots of people. But she had said just about a month before she died that it would be so much more interesting if the cause of death were reported. So, when she died, I decided to have NAMI listed as the beneficiary for memorial gifts. I couldn’t bear to say the word “suicide” yet, but I figured people would know and the discussion would begin. Which it did... which was what she wanted. Which started the publicity... which would apall her.
My husband and I couldn’t stand to stay in the area where she died, so we took off in a blinding grief on a many weeks drive through the desert. I read the top 10 books on suicide, (I don’t recommend Thomas Joiner), so that I would have answers for the “kids” when they texted, fb’d, emailed, or called. Everyone knew that suicide was somehow “catchy”, but none of us knew exactly why. Still nobody knows exactly why, but there are some very good proven ways to plan for the opposite.
There are ways to make sure we as a family and friend group drastically reduce our danger for self-caused death. By telling the whole truth of the death, and how it affects us, we bring the details of our experience to the people we love. Mental illness, combined with any other illness increases the likelihood of premature death. Poor Kaylan lived SIADH from birth, OCD from age 9, MDD from age 12, bulimia/anorexia from age 15, arthritis (probably Ankylosing Spondylitis like mine), and genetic alcoholism. Combined with a 1 in a million IQ, a fiercely independent and courageous personality, and the inability to accept defeat, her illnesses took her from us way too early.
Through my reading I learned a few crucial things. That in studies of people’s brains who have died of suicide, there is dramatically reduced blood flow and serotonin in the prefrontal cortex than in others. And that there are up to 30% more neurons somewhere in the base of the brain, but these are not as well formed. There is some talk about this being an “empathetic” or “courageous” brain structure, which may be why so many musicians, artists, soldiers, and physicians die from self-caused death. But then there’s the real possibility that families and friend groups tend to have similar coping systems, which might lead to a higher risk of suicide in and among families, coworkers and friend groups.
We already know that the predisposition to come down with a mental illness, just like the predisposition to cancer and autoimmune disease, runs in families so it may very well be a combination of genetics and coping systems together that cause suicidal thinking. Not everyone can be saved, but the studies say that nearly all people experiencing suicidal thinking want to be saved.
People need to know that mental illness is not a life sentence of complete “insanity”, if there even is such a thing, which I doubt. If that were true there would not be so many great contributors to world societies, because many of them lived with mental illness… Abraham Lincoln (MDD), Thomas Edison (Mania), etc., ad infinitum. Mental illness can be longterm or one time. It can be delirium caused by the flu, hallucinations caused by a brain injury, OCD caused by a strep infection, or depression from depleted vitamins and minerals.
We need to stop being afraid of the “loony bin” and get a grip on reality – that 1 in 5 of us will get it at some point in our lives. We all need to step up and call it what it is. Suicidal thinking. Plain and simple.
Also, here’s a news flash, our brains are part of our bodies. All mental illness means is that something is affecting the ability to think clearly at a particular moment in time. Suicidal thinking is just exactly like a high fever. It’s a symptom that needs immediate attention and care, anywhere from rest & chicken soup to a trip to the ER. It’s NOT a failure of moral strength or good character.
The reality of “co-morbidity” in “co-occurring” diseases can be daunting, but it doesn’t mean it can’t be faced. For instance, I have genetic alcoholism (which is why I quit drinking alcohol 23+ years ago), unspecified bipolar, arthritis, and now (woo-freaking-hoo!) pre-diabetes. This gives me a higher than average chance of dying of one of these illnesses if I choose not to take care of myself. Therefore I swim, bike, take medicine, eat well, seek out support, and ask my family to help “keep me honest” about how I’m doing. If a person has heart disease and depression, those are co-occurring diseases, or MS and diabetes, or… fill in the two blanks with any other physical health challenges. More than 90% of all self-inflicted deaths are alcohol related. Alcohol is a nervous system depressant. If you or someone you know is drinking to cope, call it what it is. Self medicating. We need to take as good care of our selves as we do our children and our pets. Sometimes better even.
Through literature from support groups, Heartbeat & TCF, I have learned that people who are having suicidal thoughts are so relieved when someone questions them directly by saying “are you thinking of hurting or killing yourself?”, and says “I love you and don’t want you to die”. Just saying the words “Do not take your life” can reverse the impulse and start to turn the sufferer’s thoughts toward a living solution. This isn’t always so, because Kaylan’s friend questioned her closely, and because she herself was convinced that she was in no danger of dying from her most recent bout of suicidal thinking illness, she convinced her friend this was true. We didn't know what we didn't know. Including her. After all, she had lived with cycles of periodic suicidal thinking & planning for 10+ years and hadn't died, so why shouldn't she believe she would get through that last bout?
Mostly, I learned that suicidal thinking is the cause of suicide, and that people are so afraid and/or embarrassed by suicidal thinking that we are afraid to even call it what it is. One of my worst and most persistent “whys” is `Why did I ask if her depression was bad enough to worry about? Why didn’t I ask “are you thinking of dying again?” I didn’t ask, because I was too afraid of the answer. Instead I asked “should I be worried about your depression? Is it really bad?”, to which she answered “no”. Nobody ever wants to worry their family or friends.
Then the “what ifs” started. The “what ifs” tend to follow the “whys” in my bereavedment experience. What if I had said or not said something that might have helped/hurt her? What if I had done or not done something differently? And after a 16 months & 13 days, my mind goes to “What if I don’t share this with my family and friends and they die from not knowing?”. This “what if” is the scariest and most urgent one I have. Maybe because I’ve become willing to talk about a scary truth out loud, someone will live that might have died. That’s my hope, and it may not work out for everyone, but I’m not going to be afraid of the hard truths anymore.
I know I am loved, and you can be assured you are loved as well. That said, I’m going to tell you about the times in my life that I have had suicidal thoughts. The first was when I was 27, had moved to Colorado away from my family, with my two tiny children and I was at the end of a severe 6 month post-partum depression. I told my mate, and the “ideation” (suicidal thinking) went away, simple as that. The next time I was 33, had just moved to Colorado again, and while I was on the freeway I had a flash of deliberately crashing my car. I called my mate to come get the kids, then checked myself into the hospital where I rested and recovered after a few days. In 2009, during a gruesomely painful arthritis flare which lasted 18 months - after 24/7 pain, level 9 of 10 being the worst - I wished for death most nights for a whole summer. Wishing isn't planning, but it can lead to planning so don't be fooled. The last, and the I believe the most dangerous, time was just after the benefit concert for Kaylan in Seattle.
The frantic period of reading was over. We had stopped driving. We were living in Colorado again, and the thoughts of never seeing or holding my daughter had become persistently real. I was swimming one day and the thought just came that I could just breathe in water and after a few uncomfortable moments my pain would end. Then I felt the most profound sense of peace I have ever felt in my life. I didn’t think of anyone or anything else, just the idea that I could be out of pain. I romanced the idea and started to let this plan take hold. After an hour of keeping the thought to myself I told my husband, then my sister, my best friend, then all of our kids and extra “kids” who had been feeling down, then I posted it on Facebook. The peacefulness of the ideation is what scared me, not for myself curiously, but for the people I love. For the future of my grandsons and nieces & nephews, I’m going to keep telling this story out loud for the rest of my life.
Suicidal thinking tells the sufferer that the world won’t miss her. That he would be better off dead. That nobody knows how it feels. That she is so awful that she doesn’t deserve to live. That his mistakes are too big to make right… But that’s not true, is it? Do we miss our loved ones? Horribly. Is the world a better place without them? It’s worse. Did any of them make ANY mistake EVER that was deserving of death? Not even close. People with mental illness, whether it’s brief or chronic, do not EVER deserve to die, no matter what their/our thoughts tell them/us.
And were these cogent decisions? Maybe so from their painful point of view. But was the action taken that caused death based upon a rational thought process? Absolutely not. Acute mental illness impairs sound judgement in times of crisis. Would our loved ones have deliberately made certain that the people closest to them would have to read the specific details on their death certificates? God no. Or did they want us to be so sad that some of us would think of suicide ourselves? Of course not. But this is the specific result of unaddressed suicidal thinking. Sometimes everything is done right, and a person dies anyway. And suicidal thinking mostly starts out insidiously, with thoughts of not wanting to be alive. No plan... YET. It's the "yet" that nobody should ever wait for!
There are always going to be tragic deaths from sudden or long-term mental illness, as there are with cancer or any other affliction. We cannot presume that if we respond perfectly to a loved one’s suicidal thoughts or actions that our actions are guaranteed to save them. But - as with proactive diabetes or cardiac care management, we can expect to see fewer deaths from suicide in our lifetimes if we all commit to learn some simple lessons.
The promise I make to you, and that I want from you is this: that you will not keep suicidal feelings secret, no matter how much you want to. I want you to ask for help if you need help. Say the words “I need help” if you are in distress, and learn to ask the question “are you thinking of taking your life?” if you’re afraid for someone else. Be specific. Be brave. Be straight up with the people closest to you, and if they don’t know how to help you, talk to a stranger on the TALK line. I don’t want to live my life without any more of my family or friends, and I don’t want that for you either.
Peace and Love to you and everyone you love